"Limited Progress" is a fancy way of saying she needs lots of physical and verbal clues, as well as physical assistance to complete the taskGoal: KayTar will master specific 24-36 month level cognitive skills addressing these identified educational needs: Take/Bring Familiar Objects on Request, Match Textures by Touch, Sing Phrases of Songs

She has made satisfactory progress in 8 out of 12 attempted goals! We are quite pleased with that ratio, although I suspect that if the stairs and texture matching had been attempted, it might be a little closer to a 50/50 ratio.

The teacher's note said, "KayTar is a pleasure to have in my class. She is so eager to learn songs and answer all questions!" The teacher said she is quite the little character in class! She also said that EVERYONE looooves KayTar, even the kids from the general education class (where she has her inclusion time) are very fond of her and stop to say hello to her in the halls and cafeteria. All in all, it was a great meeting!

Sunday, October 26, 2008

KayTar's surgery.We are a little over a week away from the Big Day (November 4th is both Election Day and Surgery Day, a doubly big day). She has made it through TWO FULL WEEKS of school and is drinking all of her Pediasure every day and it makes me wonder if we're doing the right thing. Of course we are. I can't make a major decision based only on this glorious moment in the sun, but parental guilt and torment know no reason. Letting someone cut into your child is definitely guilt and torment inducing. Isn't it fun to be me?!

School.Guess what? It is time for exams. AGAIN. A&P II lecture exam on Tuesday, Microbiology Lab exam on Wednesday (written this time, not practical), and I'm also going to have to take Microbiology lecture EARLY, as in this week, because it will be given while I'm in the hospital with KayTar next week. As soon as I get back, it will be time to take an A&P II practical on all the veins, arteries, and internal organs. You're jealous, aren't you?

I'm going to be on the news and it is freaking me out!Self-explanatory, really. I'm going to be on the local news and it is freaking me out! I thought the interview part was nerve wracking, but this is much worse. I'm becoming increasingly convinced that I must have said something stupid and it will be the ONLY part they play. I can't actually remember saying anything stupid, but it doesn't make me any less sure that I will look like an ass on television. Oh, the glamorous life.

Photo courtesy of KayTar.

Hindsight is 20/20.Last night Josh and I watched an old video of the kids. The video started at the Christmas before KayTar was born (I was about seven months pregnant and BubTar was about six months shy of three years old) and ended when she was six or seven months old. We were shocked at how coordinated BubTar was, how he could run and jump and walk on GRASS! He didn't sit in a W! We were shocked that he was capable of having real conversations. We were shocked that he was just about outgrowing pajamas that KayTar is barely growing into. HE WAS A WHOLE YEAR YOUNGER! We were somewhat less surprised to see KayTar spontaneously gag, gag, gag, VOMIT as an newborn. We were also not surprised to see her stuck on her back at six months of age, not holding her head up, not doing much of anything, while her similarly aged cousin crawled and sat and rolled and made eye contact. At one point KayTar made a cooing noise and I said, "Did you hear that? She said, 'Start me in developmental therapies now, please!'" Ha. Hindsight is a HOOT!

Thursday, October 23, 2008

Yesterday there was a reporter and camera guy from one of our local news channels in my living room.

A REPORTER AND CAMERA GUY IN MY LIVING ROOM.

They interviewed ME (about children's healthcare, of course).

It still seems a little surreal to me.

I've spent the majority of my life being quite certain I would never be the sort of person that might have video cameras in her living room. I was also positive that I would never make a habit of giving speeches in front of legislators or members of the press. I was equally convinced that I'd never end up in statewide papers or be flown to New York for a photo shoot either. I was probably also pretty secure in the fact that my mailman would never stop me and say, "Hey! I read about you in the paper. You guys got a bum deal."

That is to say, sometimes I'm wrong.

I can now say I have now lived through my first television interview! They said I did really well, but I was too nervous to objectively judge it for myself. The reporter even said, "They are going to think I got an actress for this one." which was obviously him being WAY TOO KIND. I'm still very nervous about it all, you know, how it will be edited and spliced, whether I'm going to sound like an ass, that sort of thing. It won't air until next week and even then I think I might just be too nervous to watch it for myself!

[this is where the photo of the reporter and camera dude would be if I wasn't so panicked that I totally forgot to take a picture of them]

Sunday, October 19, 2008

Lately, BubTar has been keen on doing things for himself. We've been delighted to discover that six is quite a capable age, every time he tries something new we exclaim, "I guess six year old CAN [insert task here]!" He's quite proud of his list of new accomplishments.

Last night, after eating a piece of toast I made for him, he decided he wanted another, but this time he wanted to do it himself.

He said, "Mom, I want to make my own toast. Can you give me lessons?"

Then he walked to the microwave, opened it, put his slice of bread in and looked at me expectantly.

I said, "Lesson one, you use the TOASTER for toast."

He looked at me sheepishly for a second, grabbed his bread, and said, "I KNEW THAT!"

Wednesday, October 15, 2008

(If you're short on time, the highlight (at least, for me) is when she has the sidebar about whether I like clams or not near the beginning (when you're working on a story, you've just GOT to do your fact checking, you know), after that it kind of devolves into a monologue of three year old ramblings and motivational speak, which can be entertaining in their own way. And yes, she is singing Pat BenaTar when the video starts. )

Tuesday, October 14, 2008

From time to time, I get a random email or comment with a link or a condition name for me to check out in regards to the KayTar. I always appreciate people taking the time to think of our little mystery and pass along information they feel might be pertinent, even though we've (mostly) gotten to the point we've (mostly) accepted the questions we live with and (mostly) stopped pining away for that elusive answer. A couple of weeks ago, however, I had quite the influx of emails/comments all suggesting a single condition, mitochondrial disease. Weird, right? In fact, just as I was telling Josh about the weird Twilight Zone-ness of it all, I sat down to check my email and BAM! there was another one. So I did what any overly superstitious blogger mature, responsible parent would do, I emailed the pediatrician about it.

She knows about the blog, so I basically said, "Hey, the Internets told me to ask about this!" only with a bit more verbal camouflage than that, and she was kind enough to not even point out I was taking medical advice from people who I fondly know only as "anonymous". She even went so far as to hop into her forklift and haul the behemoth also known as KayTar's medical file to her desk for review. She's good to us like that. She said that KayTar fits some of the symptoms of some of the mitochondrial disorders, but not ALL of the symptoms of any. Still, she feels like looking into it might be helpful, so we will. Her neurologist (who we saw yesterday) said that we've tested her peripherally for mitochondrial disorders, through labs and such, but since she is headed to the OR (on November 4th, in case you missed the rescheduling update), he's going to order a muscle biopsy to get some more conclusive results (though they'll be look at things other than mitochondrial disorders, too). Now the OR to do list look like this:

Tonsil/adenoid-ectomiesG-button installation ABRMuscle biopsy

We like to multitask, what can I say?

The neurologist said it will take about two months to get the results back and even then we might not learn anything new, but he said there isn't a downside to having it done since she'll be having surgery either way. Two months, meh, big deal. We've been waiting years for a diagnosis, so what's two months? Just a blink, really. I almost didn't write about this at all. After last year's hope dashing debacle I'm reluctant to approach anything even mildly resembling hope, but I don't really feel hopeful about this, just curious. How bizarre would it be if my friendly little lurkers were the reason we happened upon her diagnosis? That would definitely be a story for Mystery Diagnosis. Heh.

So to YOU, my dearest lurkers, (yes, I can see you back there in your trench coats and dark glasses) thanks for the suggestion!

PS: While I'm tapping into the collective knowledge of the Internets, does anyone have any personal or peripheral experience with the BAHA (bone anchored hearing aid)? We're researching options for KayTar's increased hearing loss.

Wednesday, October 08, 2008

Tuesday, October 07, 2008

KayTar and I argue a lot--maybe argue is the wrong word, she has an opinion and I have a different one, and we voice them repeatedly--nope, I guess argue IS the right word. I play along dispassionately, mostly to appease her, but she really enjoys herself.

For instance, the other day I picked up lunch for myself on the way to get BubTar from school because groceries at home were severely in need of restocking. Lest you think I am a horrible mother, I offered KayTar food as well, but she passed on it. SHOCKER! Well, we get through the drive through and she says, "Where is MY soda?" No food(!!!) does not mean no drink, evidently. The conversation went like this,

K: Give me my soda.

M: I didn't get you a soda. I have a soda. Want a sip?

K: Okay. It is MY soda.

M: No, it is MY soda, but you can have some.

K: It is MY soda.

Me: (silence)

K: But it is MY soda, Mom!

Me: (silence)

K: (getting louder) BUT IT IS MY SODA, MOM! SAY IT TO ME!

Me: (silence)

K: (speaking in the ranges only dogs can hear) SAY IT TO ME!

Me: Actually, it is MY soda.

K: Well, actually is is MY soda.

Me: Mine.

K: Mine!

Me: Mine.

K: Whatever, it is MINE.

Hold up there tiny sister-friend, did you just say "Whatever!" to me?

And then it hit me, she sounded JUST.LIKE.ME.

You see, we have these little conversations about 100 times a day. Over everything. Maybe I say that I like a certain thing and KayTar assures me I DO NOT like that specific thing. Or maybe she wants to wear something that is in the dirty hamper. Or maybe she wants to watch something that isn't currently on TV and she assures me that, actually, it IS on TV! Or maybe she wants defend her stance on the idea of spontaneous generation. Whatever. We go round and round all day long because she loves the repetition and back and forth of it. We even argue when the answer is yes, as seen below:

K: Can I do coloring?

Me: Yes. Here are your crayons and pencils.

K: Ohhh! Can I do coloring?

Me: Yes.

K: But can I do coloring?

Me: Yes.

K: I'm going to do coloring. Can I do coloring?

Me: Yes, you can do coloring. (stepping away slowly)

K: MOMMY! Can I do coloring now?!

Me: Yes.

K: But CAN I do coloring?

Me: Hey K! Can you do coloring?

K: Yes, I can do coloring.

Me: (smugly thinking I've settled it)

K: But Mommy, can I do coloring?

Even when I go quiet (as seen above) she keeps poking until I've given her a satisfactory effort. Eventually, though, I tire of it (after we've discussed the exact same thing, oh, 750 times or so) and need a way to opt out. Well, as I realized in the car that day, my way to opt out has been saying, "Whatever." under my breath. Look at me, being a responsible parent! But usually, once we get to the Whatever Stage, she is able to let whatever the argument of the moment is and walk away happily. It works. Well, a couple days after the soda-whatever incident, I figured out WHY she walks away happily.

K: Can I wear my costume now?

Me: No, you have to wear your uniform today.

K: But can I wear my COSTUME now?

Me: No, you have to wear your uniform.

K: But ACTUALLY, I LOVE my COSTUME. CANIWEARITNOW?

Me: Actually, you are going to school and have to wear your uniform today.

K: But I can wear my costume.

Me: No, you have to wear your uniform.

K: But ACTUALLY, I CAN wear my costume.

Me: Nope. You have to wear your uniform.

K: BUT I WANT TO WEAR MY COSTUME (slipping into sing-song voice) and be a beeeeautiful mermaid.

Me: I know, but you have to wear your uniform.

K: But I have to be a MERMAID!

Me: Not right now. After school you can be a mermaid, now, you have to be in your uniform.

K: Mermaids don't HAVE uniforms! (slipping into sing-song voice) And I am a beeeeautiful mermaid.

Sunday, October 05, 2008

Yesterday, I got an envelope in the mail from SCHIP. It was addressed to KayTar, but it didn't look like one of the many little FYI letters the insurer sends out (Be on the lookout for bee stings! Don't forget to have your child immunized!). I opened it and was surprised to find a new card for her. We already have her card and a back up, actually, so I was a little confused. I had panicked for a split second, worried that they had changed her PCP (our beloved pediatrician) and this was our notification, so I quickly scanned the card for changes. And I found this:

Copays:

OV (office visits): $0

ER: $0

InP (in-patient hospitalization): $0

RX (generic/brand): $0

In the 3 months she's had insurance, we've spent her out of pocket maximum. Now everything is free until next July. That includes pediatrician visits, specialist visits, tests, labs, ER visits, medications, Pediasure, hospitalizations, durable medical equipment, and SURGERY. Everything will cost us $0. What timing! As my wise friend Katie pointed out,"God said, 'DO THE SURGERY NOW KYLA.'"

Friday, October 03, 2008

KayTar missed school on Wednesday (and Thursday and Friday), but I kept her ENT appointment because she wasn't feverish (yet). I had questions I hoped to get answers for and I didn't want to cancel unless I absolutely had to. Turns out, I actually got some answers. Imagine that! I'm going to break them into categories to make it more easily digestible. I've had two days and I'm still trying to swallow it all down.

1. Progressive hearing loss...

was confirmed. With her right ear masked (white noise fed into her functioning ear to block out sounds) her left ear tested completely in the profound range. There was a spike at the very end, but it wasn't high enough to get into the severe range. However, her bone conduction results looked much better than the regular test and the audiologist isn't sure of what that indicates. She said we definitely need an ABR to get more information. The ENT said this can be done during her surgeries, it will just add about an hour to her overall anesthesia time.

I asked him to give me the odds of it progressing to her right ear and he said there are none. However, he did say that if we were to get an MRI of the temporal bones and detect a soft tissue abnormality on the left that isn't present on the right, then that would be a good indicator that the right ear is safe, but no abnormality means no indicator. Her CT of her temporal bones was normal, but an MRI has more detail where soft tissue is concerned and an abnormality might be detected. Her brain CT was clear, but her brain MRI was not...that sort of deal. So if and when she has another brain MRI, we will add on a temporal bone MRI to reduce anesthesia for her. She sees her neurologist on the 13th, so I suppose we'll chat about it then.

He also said her hearing aid is probably not helping at all at this point.2. Surgery

He thinks we should move the surgery up. In fact, when the nurse came in to schedule it she said, "How is October 14th for you?" And then my heart just fell right out my ass and landed on the exam room floor. Thwack! It was a little embarrassing, because then I had to scoop my heart back up and swallow it down again. Gulp. Her ENT feels that postponing the surgery until December will cause her to miss more school for infection than she would miss for surgical recovery time. I see his point, I've thought it myself to be honest, but...of course there is a but...I've been easing myself into this decision. See, I've made it, but I know I don't have to act on it for a few months which provides me with ample emotional digestion time. When he talked about moving it up, but insides were all "Whooooa! Let's throw on the breaks here, people! This is not what I signed up for!" My brain was all, "Oh, yes. I see your point. If that is what is best for KayTar, of course we'll do it." Then my insides were like, "But we have loads of agonizing What Ifs to go over before this happens! Emotional torture yet to be experienced!" and my head was like, "If you've decided it is the best thing for her, why wait?" I should sell tickets to these debates, I think.

Since I couldn't make a decision, I did the next best thing...I talked to our pediatrician. God love her, she told me that either decision would be fine. She sees the medical reasons to do it sooner and the momical (yeah, I made that word up just now) reasons I might want to wait. However, she did inadvertently lead me to an epiphany of my own by reminding me that the recovery will be no picnic for KayTar. If she wasn't getting a g-button at the same time, there would be no way we'd be able to do the tonsillectomy in the first place, really. Can you imagine KayTar wanting anything to eat or drink after throat surgery? HA! As it stands, she will be in the hospital for about a week and then she will be home and not feeling great for another week at least. If we do this during her Christmas break, it will ruin her holidays. I don't want her to have horrible holidays! There are other reasons, too, of course. Cold and flu season is descending upon us and being tonsil-free and in possession of a g-button will make it much easier on her. Sure, she'll miss 10 days or so for the surgery, but hopefully she will avoid at least that many absences by having the surgery. The only downside seems to be that I'll miss a week of my classes while I'm in the hospital with KayTar. If that is the only real problem I can come up with, I don't really see any reason to put it off. And just like that, I think I'm okay with it, and not just in the I'm-forcing-myself-to-be-okay-with-it-through-sheer-force-of-will kind of okay, the REAL kind of okay. I might even feel a tiny bit of peace about it all. Strange how that happens when you least expect it.

On Monday, I'll call the nurse and see if the 14th is still available for both the ENT and pediatric surgeon and then we'll go from there. The trickiest part of this is going to be keeping her healthy long enough to HAVE the surgery, I think!